Brutally Honest Blog on Caregiving - Do You Agree?

[Jen]

Wow, check out THIS brutally honest article from a recent caregiver. 

Let me know, do you feel the same? Do you think she went too far? Did she hit the nail on the head? Do you think no one cares about caregivers? 

[agoyer]

I think in most ways she said things that we can all identify with all too well. There is one big way in which I would differ though - I have honestly never hated those I'm caring for. I hate Alzheimer's, I hate strokes and Cushing's disease and colon disease and myriad other things that have cause my loved ones pain and changes in their personalities and abilities. But they are not their diseases and I don't feel hatred toward them ever - even when I'm annoyed with them! 

[GailL1]

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@Jen wrote:

Let me know, do you feel the same? Do you think she went too far? Did she hit the nail on the head? Do you think no one cares about caregivers? 

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Personally, I don't think this person has what it takes to be the type of family caregiver with this much hands-on requirements.  He/She might be better in a supportive or managing roll.

I learned a long time ago that within each of our lives certain responsibilities come up that must be handled.  The way we handle each of these responsibilities is up to each of us and that decision has to be based on our abilities and self-feelings to handle such task and if we aren't up to the task at hand, it is better to be left to the experts in the field of the responsibilities.

Would this person feel any better if they had to get an additional job to pay for someone to care for their loved ones - kids and person requiring care most likely.

I choose to take care of my spouse, from beginning to end, course I did have medical training which did make it somewhat easier physically.  I choose to do this because he would have done the same for me albeit perhaps in a different way.  That does not mean that I didn't get tired sometimes and needed a break to come back replenished.

However, I also made the decision NOT to take on the roll of direct hands-on caregiving to my mother and choose to be on the management side of this responsibility.

Whatever the responsibility that has to be taken care of, we each have choices.

1.  We can perform the task ourselves, whether or not we have the skills to handle what is necessary.

2.  We can investigate and find other options which may require us to pay for the help and experience which we need, all or some of it.

3.  We can just do nothing or walk away.

Each of these decisions has to be based on what you as a person is willing to accept, inside and out.

I apply these choices to any life responsibilities that might come along.

To your last question, Jen, "Do you think no one cares about caregivers?"

If you are talking about family caregivers, I think many care but it is up to that individual to investigate things that could help them.  It is up to them to look to their community of friends, church, other relatives, groups, etc. to build a support network for themselves, personally or in hands-on help of some kind.

[msbaron]

I am coming late to this thread, but I'd like to comment as well:

I agree with GailL1 that there is a necessary element of a sense of responsibility in caring for a member of the family.

But I won't say "loved one."  I was suddenly, and quite unwillingly, thrust into the role of caretaker for my mother. I am very sorry to say that she was a mean-spirited and deliberately difficult person, who alienated every single member of her family, including my brother and myself.

However, when she began to act "strangely," I took over the role of watching over her, even though she hated the idea that it was me.  My brother did not lift one finger to help her, and never even asked about her condition unless I prompted him (he lives in another state).  The rest of our estranged family simply didn't care, they disliked her so much.  My mother categorically refused medical help, and actually threatened to kill any outside caregiver I tried to bring in to help her in the day-to-day aspects of her life.  If you knew this woman, you'd know that it was necessary to take such threats seriously.

As it turned out, it wasn't even Alzheimer's that took her.  Rather, she was having small strokes.  I didn't know this until after she died, because she would not see a doctor.  

There was no love lost at all between her and me.  She had beaten that out of my years before.  But I did what had to be done, because there is such a thing as blood ties, and I hope I have a sense of responsibility.  But I still  deeply regret not being able to shed a single tear for my own mother.

One of the worst deficiencies I've seen in advice to caregivers is that virtually no attention is given to those of use who have less than ideal relationships with our parents (or others who need care).  It does happen -- just because someone has children does not make that person a loving mother or father.  I attended serveral meetings sponsored by elder caregiver organizations, and had to sit through hours of listening to bereaved children crying over the deteriorization of their beloved parents.  It was shattering for me, too, to hear about the wonderful relationships these people had, something I never had.  But I did what had to be done, because I hope I'm a responsible adult, and because this woman who raised me, but gave me every evidence that she hated me, needed help.

Now I'm involved in caring for my disabled daughter, and as frustrating as it can be, I never waiver.  I love my daughter; she is a wonderful person, and she deserves the best care I can give her.  I gave that kind of care to my mother as well, but for very different reasons.  As they say, "needs must."

[Jen]

Wow Jane,

Thank you for sharing your story. I think having a relationship, or lack there of, yet taking on the role of caretaker of that person (despite the feelings/issues) says a lot about your character. You're a wonderful woman. 

[Jlincoln008]

I'm so glad you wrote about caring for your mother, Ms Baron. I was just reading about how carefully and lovingly you help your daughter. And here you've shared the difficult history of taking care of your very difficult mother. Wow. 

There is some acknowledgement, but not enough, of the caregiving relationship between family members who truly dislike each other, but still 'step up' to the basic 'honor thy mother and they father' (even if they were brutal ne'er do wells. that must be in the fine print on the 10 commandments.)  I googled and quickly found: http://www.aplaceformom.com/blog/10-13-14-caring-for-family-you-dislike/ and other blog posts about it. I know there's at least one book on the topic. As time passes and the fragmented American families take on more and more caregiving, this dynamic will be more prominent, i predict. When the baby boomers hit their 80s, some researchers call it the "silver tsunami." We are woefully unprepared for all the dementia and disability. And the psychological burden of caring for a relative you actively can't stand is HEAVY.

It sounds like you did the right thing by your mom, and with no acknowledgement from her son, your brother. I'm glad you didn't have to deal with her disability for terribly long. Wow.

Returning to the theme of 'does anyone care about caregivers', i do think we owe it to caregivers like you to acknowledge what a service you provide. Because when you do not, the state steps in with guardianship and social workers, which isn't terrible, but its not ideal. There's nothing like family help, even if it is reluctantly given.

You are a survivor and a gift to your family. 

Jane

[sj74427336]

Hi - I'm Sharon and this is my first time trying to help myself while helping my mother and her husband.  I had a total melt down this past week and knew I needed help. 

I had beein  living in Florida for the past 16 years and in the last three or so years my mother's sight declined and is now totally blind.  She also has onset dementia.  My stepfather as well although he is a good man and treated us kids as if we were his own growing up.  Because my brother and his family had been stuck with my parents for so long and now mom was really getting worse, I decided to move back to Mass and help.  It also meant that I would have to live with them.  We were doing pretty well until mom started hallucinating and acting out.  My stepfather and I could not help her.  She's 84  and he's 94.  I'm 65 and was realizing that I'm way over my head here.  She went into the hospital for an evaluation and from there to a  nursing home.  Needless to say, she is even angier now than she ever was when she was healthy.  We never had a loving relationship.  She put me through hell in more ways than you can imagine.  Things that still hurt me inside even though they happened over 50 years ago. 

I have a brother who lives in CA and comes home once a year and a brother like I said lives nearby.  I had a brother who died 16 years ago and a son who died 5 years ago.  I have no family other than my parents and brothers.  I thought I could help and things would work out.  But I feel guilty about her being in a nursing home and feel angry I have to deal  with my stepfather everyday. My brother here has practically shutdown and his wife has been a tremendous help to me but she can only do so much.  I'm left dealing with my stepfather everyday and driving him back and forth to the nursing home and then having to sit with my mother while she curses and bitches at us.  I feel I will totally loose my mind before it's over.  I hope connecting here will help me with the stress and anxiety I feel.  I'm also thinking about joining a group here if I can find one.

Well, that's it = thanks for listening!  Hope you and all of us dealing with this will get through it without too much damage to ourselves.

Sharon

[EveRH]

@sj74427336 - You're dealing with an awful lot! Considering your stepfather's age & condition, would it be easier if both of them were in a facility that has different "continuum of care" units? Your mother could be in the skilled nursing unit, while her husband could be in an adjacent senior residence or assisted living. That way he could visit her regularly, with the help of staff, and possibly even eat some of his meals with her. That would have to take a lot of the load off you & your siblings.

Why not do some research on facilities, and reach out to the town/county's office of the aging, for professional guidance about facilities. Then meet with your siblings to check out facilities, and their suggestions for how to handle both your parents while minimizing the cost.

Good luck!

[EveRH]

I've been a caregiver several times during my lifetime, starting when I was a young teenager. I was raised to believe that "**bleep** happened", and reponsibilities just came with life. Many years later, I was again a caregiver, this time comparing notes with a relative who'd managed to get thru to her early 60s, before having to take care of anyone. I'll never forget a comment she made to me during a phone call, "You're good at this .. you were raised to take care of people! I was never expected to take care of anyone; it's not fair that I'm stuck with it now." It really reminded me of the mean sisters talking to Cinderella.

Being a caregiver is rarely fun, but it forces the smart person to do all their homework, finding out what medical, community & other support services they qualify for, to help out. Decide honestly what you can & can't do, what support you can get from family members, and outside organizations, and what you may have to pay for .. and how.

Part of the caregiver issue starts with how parents raise their children; if all aren't raised with the same feeling of responsibility towards family, then eventually the burden doesn't fall evenly on all of them .. some do 99% of the work, and others just show up to visit once a year. The other part of the caregiver issue is not having the "family conversation" as parents get older, regarding how they'll deal with the transition.